Anyone with Sensory Predominant CIDP?

This topic contains 33 replies, has 11 voices, and was last updated by  Jim-LA 6 months, 3 weeks ago.

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  • #114340

    billwhit1
    Participant

    I did not know there was a sensory edition of this stuff. My GBS (?) started in 1984. We did steroids at first. Then we went to Mayo Rochester in the winter.Dr Bartelson told me to go home and try PLASMA Phresis. I had over 15 PP up to 1984. I had a 15 year break and I felt good. I like to exercise, run ride or just jumping.Last year CIDP attacked again. This time IVIG was the big boy on the block. It did nothing for me. After about 8 months we decided that IVIG was not helping. My Neuro decided to go back to PP for a short period of time. After 2 weeks and 6 PP we stopped. My Neuro told me thats it I have nothing else to offer. He (A Mayo trained ,by Bartleson) that may be we should go to Mayo again (Florida the time) So within 4 weeks I’m all set to go to a more pleasant weather. My neuro did send them a letter and my hospital is affiliated with Mayo. So they already have all my hospital records. Ive got a plan to stay for three days and a life time driver to take me., I’m having autonomic systems to malfunction. The biggest on is BP. I’ve about had to argue with a good DR. He just would not listen. He was called about every other day until he’s started to allow us to medicate as we needed. He has a real hang up about PRN but he finally conceded. We saw him just last week and ask him if MAYO should examine any special areas. He said no.
    So I check in on Monday Sept 15th. The only thing I don’t like about this is the nerve conduction tests. After about a half hour Im so jump I can’t even think.The nerve biopsy is painful but its over.I think they are going to try to separate autonomic system and CIDP.

    #116258

    Barb Ehrgott
    Participant

    Hi there- I just joined this forum and saw your questions. You and I have the exact same CIDP…sensory. It started in 2003 with numb big toes. Finally in 2007 was told that I had MS. Went with that till 2012, when I couldn’t lift my legs to drive a car. Mayo, Jacksonville finally correctly diagnosed after many tests including spinal tap and EMG.. I use hand controls to drive, eat and exercise (pool) the best I can and 3 ½ years ago get IVIG every 4 weeks. (2 consecutive days). Pain is more like random shooting pain. extreme exhaustion in legs, and little sensation in hands. So far, it is all that is being recommended by my Neurologist who is head of Clinical Trial/Research center. I pray someday they will come up with a cure/remission for me. Staying positive and living with my “new normal” life has daily challenges. I have good support and care from my partner. He helps me continually. I would like to hear how you are doing since your post!

    #116259

    Barb Ehrgott
    Participant

    Hi again- See my previous post explaining my journey w CIDP.

    So my question is after having complete leg numbness up to my pelvis, and hands, and balance issues, my walk is getting slower and slower. What can I do to increase my walking ability? I do exercise.

    My problems started in 2003, so now 16 years later, I need new options and answers. I don’t want this anymore!!

    #116262

    Jim-LA
    Participant

    CISP is a very rare variant of CIDP and research into it is incomplete at best. However, renown researchers, such as Dr Richard Lewis, have been covering CISP. Here is an article he updated a few weeks ago that includes recognition of the variant:
    https://www.uptodate.com/contents/chronic-inflammatory-demyelinating-polyneuropathy-etiology-clinical-features-and-diagnosis

    The following 2017 case study of CISP treatment has demonstrated that varying IVIg dosage and frequencies can have a favorable effect on treating CISP:
    https://bmcneurol.biomedcentral.com/articles/10.1186/s12883-017-0906-2

    The half-life of SCIg does not differ appreciably from that of IVIg, and it can be administered at lower dosages and more frequent intervals than IVIg resulting in higher and more stable serum IgG levels, potentially improving efficacy and reducing adverse effects and ‘end-of-dose’ effect (treatment wearing-off before the next dose is due). Patient self-administered dosing is well-tolerated up to 50 grams per week administered in 2-3 injections. Studies of cost-effectiveness and health-related quality of life favor SCIg use in treating CISP.

    SCIg is a subcutaneous injection/shot given into the fat layer between the skin and muscle. Many people can administer SCIg themselves; I’m not one of those. I’m overly sensitive to anything puncturing my skin and these shots really stinged me, so I discontinued them. I’ve since had a few other types of subcutaneous shots and tolerated them as long as they were given v e r y slowly. SCIg is discussed here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783

    Some other options you may wish to review include – Consider taking Vitamin B12 (Methylcobalamin 5000MCG) and Alpha Lipoic Acid (1200MG) daily to help with peripheral neuropathy while waiting for something other than IVIg/SCIg. These over-the-counter supplements have helped some who have suffered from GBS/CIDP and variants. HSCT is a newer treatment option (still in clinical trials) that has worked for some. You can read more about HSCT here:
    https://forum.gbs-cidp.org/forums/topic/problems-with-ivig
    https://forum.gbs-cidp.org/forums/topic/sct-futuristic-science-or-down-home-bone-marrow-transplant

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